Educate Yourself
FSHD is highly variable, even among affected family members. Each person possesses a unique combination of genetic and environmental factors that influence his or her body and health in general and FSHD in particular.
To crack the code of FSHD, patients are essential. All the breakthroughs in FSHD have been made because patients and their family members got involved. We are hopeful that a treatment is within sight and your participation will move us closer to discovery.
There is great power in community. When we come together, each bringing our own unique strengths and skills, we inspire each other to go farther and reach higher than we can when we go it alone.
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us. Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).
Latest Blog Posts
#GivingTuesday Telethon
#GivingTuesday is a global day of giving fueled by the power of social media and collaboration. This year, it falls on December 3, and we are marking the day by holding our first GivingTuesday Telethon. Streamed over Facebook Live, our Telethon host will interview leaders in our community—activists, celebrities, scientists, doctors, people doing awesome things—to…
The Future is Now for the Voice of the Patient
At the end of the day, if there were a drug that stopped FSHD in its tracks, would you want it, even if it did not restore what you have already lost? What if a drug made you stronger temporarily,…
Upcoming Events
Dec
18
FSHD Radio – Meet Meredith Huml
Meredith Huml Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM ET | 8:00 PM Central. His guest this month is Meredith Huml, director of the North Carolina chapter. Diagnosed at age 12 with a "disease she had never heard of," Meredith faced the wrenching loss of her beloved dancing....
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The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us. Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).